hi everyone. Been on alendronic acid for about 4 months but have had a small problem of irritation in my throat, causing coughing. Coughing is painful, having 4 spinal fractures in April.
I’ve now been asked to change to zolondronic acid, yearly infusion. This is NOT the same as denusomab.
is anyone on zolondronic acid, and if so, how have you found it, please?
If it’s any help for you - my friend has been taking zolendronic acid for three years - she has just finished her course earlier this summer and is having a ‘holiday’ from it. She couldn’t take AA because of gut problems.
She has been quite happy on it and I gather she can’t wait to start it again but has no idea when that will be.
thank you SO much for your information about your friend. I have been concerned it this has been some good news
I hope you don't mind me asking if your friend had zoledronic acid via an infusion, as this is what I've been offered, and still contemplating. I needed two teeth removed first. thank you.
You need to talk with your dentist prior to taking the meds and let him/her know what you are considering having a zoledronic acid infusion. All major dental work should be done well in advance of taking any bisphosphonates.
Thank you, that is why I've had the teeth removed as they had a very very mild wobble ad he said they shuld come out. I've not decided to have the drug yet, my femoral neck is 3.6 so that worries me, and I'm not sure if diet and exercise and supplements is enough. I have severe RA so can't exercise excessively.
I was trying to find some info on bisphosphonates and I stumbled upon this article--note, it is pretty much anti-bisphosphonates and I am not trying to talk you out of taking them or having the infusion--I've taken alendronate and have had 1 zoledronic acid infusion.
However, the article states
"Increased risk of ONJ has been seen more frequently in the nitrogen-containing drugs, most likely due to their differing mechanisms of action. The non-nitrogen containing bisphosphonates are metabolized by osteoclasts intracellularly into inactive non-hydrolyzable ATP analogues, which are directly cytotoxic and induce apoptosis. The nitrogen-containing versions inhibit critical enzymes in the mevalonate pathway, thus suppressing prenylation of small GTPases essential for many cellular functions."
Etidronate (Didronel®) Oral/IV does not contain nitrogen Procter & Gamble
Zoledronic Acid (Zometa®) IV contain nitrogen Novartis
lmreview.com/building-bone-...
The next time I see my doctor I intend to ask him about this and about Etidronate--if I decide to have a 2nd infusion and he says Etidronate is fine to take, I might try that instead of the zoledronic acid, because why not.
Hope this is helpful.
thanks so much for all this information. I’ll investigate further before making any decision.
Do you know if your friend has had improvements in her BMD after taking the zoledronic acid? And if yes, how much improvement.
I don’t know. She doesn’t really ask many questions about her treatment or question it in any way. Think she thinks I’m odd that I do and also that I don’t want to take osteo meds. She’s perfectly happy about her infusions though.
Actually I’ve got a friend at a class I go to who has infusions and is the same and I know other people who take AA and wouldn’t dream of not doing so.
I think you’re either happy to take osteo meds or you’re not.
Taking osteo-meds and not asking for the results is not smart. Why would anyone take meds with out confirming that the meds were having a positive effect. Bisphosphonates are serious drugs and can cause serious side effects--ONJ and esophageal cancer are no joke. To continue to take meds without making sure they are worth taking, well good luck with their overall health. Not fracturing isn't proof that the meds are working either.
Some people - an awful lot of people in fact - trust their doctors implicitly and do exactly what they are told without ever questioning their treatment and she is obviously one of them. As I said earlier - she can’t believe that I stopped taking my AA.
It's one thing to take your doctor's advice but not asking if things are improving is a different level of not paying attention to one's health.
I took alendronate for 1.5 years, quit due to digestive tract issues, took a 4 month holiday, and then had 1 zoledronic acid infusion. My dr's plan was that I would have another infusion this year. I am leaning towards not having one. I was never thrilled with taking the meds and feel like my dr. isn't giving me enough info or help--for instance, I am trying to have a DEXA with TBS (trabecular bone score) but not all imagining centers have TBS capabilities. When I asked my endocrinologist about where I could get a DEXA w/ TBS done the answer I was given is "we don't know but you can call around" which really makes me wonder why he claims to treat osteoporosis. Pretty sure he is just in the prescription writing business and it is highly annoying.
Doctors should have to tell patients if there practices are about pushing pills or about working to improve health because there is a really big difference between healthcare and have a degree that lets you legal use a prescription pad.
DEXA scans arent proof either unfortunately. Bone density and bone strength aren’t the same thing. Another complicated story! Many of us are in a similar position - those of us who prefer to find out for ourselves.
Yes, that is why I am trying to get a DEXA scan with TBS (trabecular bone score). I have finally found an imaging center in my state that has TBS capabilities. Now, I am waiting on my unresponsive endocrinologist to submit he necessary referral.
good luck! I wonder if we have access to these in the UK.
Only a minority of UK DEXA scanners can measure TBS. I think they're located at university hospitals. If you can afford it, you could have a private REMS scan, which includes a bone strength score along with t-scores.
Thanks for this - useful to know.
Has anyone on this thread ever had bone turnover marker blood work done? I have a script from my endocrinologist (he only wrote it at my request) to have these done. I learned about bone turnover tests from ppl on this website and over the summer I attended a webinar on the topic. Sadly, my endocrinologist didn't do a baseline test before starting me on bisphosphonates and didn't do a test 3 months after starting the osteo-meds to see if the drugs were actually doing what they are supposed to do.
The end of this week marks 1 year since I had my 1st zoledronic acid infusion. I know that being on bisphosphonates can change the result of the bone turnover marker tests, but I am hoping, since it has been a year, when I get the tests done this week, it will be almost as good as if I had had them done before starting any meds and give me a somewhat accurate baseline or at least some insight into what is going on with my bones.
When I attended the bone turnover marker webinar, the presenter (doctor) said that you definitely need to be fasting when you do the bone turnover marker tests but I think he also mentioned removing something else from your diet for at least 48 hours. I tried to ask my endocrinologist how to properly prepare for the tests but they won't get back.
If anyone knows how to properly prepare for bone turnover marker tests, please let me know what you were told to do so I can get an accurate reading.
Thank you.
Note I did find this information
labcorp.com/help/patient-te....
I also found this
nps.org.au/australian-presc....
Which states: The N- and C-terminal ends of mature collagen are released during bone resorption and can be detected in the circulation. Although N-terminal telopeptides can be measured in serum, serum concentrations of the C-terminal telopeptide of mature collagen are more useful in monitoring progress in osteoporosis and in bone resorption in multiple myeloma. A raised concentration has been associated with an increased risk of fractures independent of bone mineral density. Measurement may also be useful in monitoring the response to antiresorptive drugs such as bisphosphonates.
AND
The intake of food influences bone turnover. Dietary calcium appears to inhibit bone resorption. Calcium supplements taken in the evening significantly reduce resorption markers, in the fasting state, the next morning.
NOTE: This past January, after I search for info on how I could make my body to absorb more calcium, one of the changes that I made was how I take my supplements. The very last thing I take before going to bed is a calcium supplement. I just found the article (link posted above today). It seems to confirm that my taking calcium before bed is a good idea. I REALLY THINK OTHER MIGHT WANT TO RESEARCH AND POSSIBLE TRY THIS--MANY TAKE CALCIUM BEFORE BED, either as a supplement or a glass of milk (only drink the milk if it won't cause you to wake up during the night to go to the bathroom).
I contacted GE and spoke with someone in sales (for GE Lunar). She pointed me to medimapsgroup.com the form is on medimapsgroup.com/find-cent... they were very quick to respond--I had a list within about 15 minutes. Note, many DEXA scanners could do the TBS if they had the software (they just don't have it). The scanner I am trying to get my DEXA with TBS done on is a Hologic scanner--pointing this out because Hologic scanners can do TBS also, if they have the software.
Side note, my endocrinologist who dismissed me in January 2020 when he was prescibing osteo-meds and I was saying, "but I thought my bones were strong because I have had a few major falls and not broken anything."
His response was, "That's not how it works."
After doing my own research I've learned that is how it works 
He is not going to be happy when I get my next DEXA on a Hologic scanner because HE won't be able to compare the results to me last DEXA. Too bad. I want my trabecular bone score so I can make an informed decision about how I would like to proceed.
Also, when medimapsgroups responded to me with a list of imaging centers with TBS capabilities, they asked if I would like them to reach out to my imagining center to get them to upgrade to TBS. I said yes, and provided the contact information. LOL. The office manager at my normal imaging center is going to totally aggravated if the medimapsgroup or GE Lunar contacts her and tells her that I requested they call her about installing the TBS software--hahahaha.
good for you! And thanks for the information…
I’ve just spoken to her on the phone and she says she doesn’t know if her bones have improved or not!!! I can’t believe she doesn’t even seem to want to know. To me that’s weird.
Ask around, you may find more answers in other groups too. We all respond differently so if it's not right for you, it's just not ok. Chat to your doctor or nurse too. Margaret Martin of MelioGuide is great with positive exercise too 😀
AA has a side effect that if you have oesophagus issues or are on medication for GERD or similar issues then it’s not recommended to take it.
Can’t speak to the zolondronic one but that scares me too.
Zoledronic acid is given as a yearly infusion and is sometimes prescribed when patients can’t tolerate oral bisphosphonates because of acid reflux, etc.
Sadly, there don’t seem to be any I would happily take.
Believe me, I was not thrilled about taking osteo-meds.
I started in June of this year, June, 5 months ago and I've finally made progress on finding an imagining center that can do a DEXA with TBS! It's a 3.5 hour drive from my home, but I don't care. I will happily make the trip if it means getting a better understanding of what exactly is going on with my bones. I had to share with someone it seems pathetic that I am so excited about this but my endocrinologist is great with a prescription pad but horrible at actually trying to help me stay healthy natural.
My short term plan is get my next DEXA and reassess. My doctor wants me to have a 2nd zoledronic acid infusion but I told him I wouldn't w/o having another DEXA but the truth is I'm leaning towards not having another infusion regardless of what my upcoming DEXA shows--if my numbers haven't improved, what's the point of having another infusion and even if they have, I have made lots of tiny changes to my diet, how I exercise, my supplements, I even forked over a small fortune for minimalist walking shows and I am currently working with a physical therapist to help me sleep through the night.
I really hope that when I finally do have my next DEXA (it will definitely be before the end of this year) that there is some improvement. With all the changes I've made and having gotten an infusion of a drug that can potentially cause so nasty side effects, a drug that my endocrinologist really didn't give me enough info about, it will be disappointing if there has been no change or worse more bone loss.
I can relate and understand. I’ve noticed the doctors aren’t doing their own research. They are prescribing the drugs without having carefully looked into them. If you ask a question they can’t answer it and shows they don’t know much about them. This applies to other drugs too. They may be time poor but if it was for them or their loved ones they may be more up to date with the science and weigh up the pros and cons.
I called the zoledronic acid drug manufacturer to get more info. They told me that I could ask my endocrinologist to call them directly and that way it could be a peer to peer conversation and then my doctor could provide me with the details. So I asked my endocrinologist and he said, "I don't have time to do that" which I find complete unbelievable and infuriating.
That’s actually disgraceful. No wonder so many of us are in a quandary.
Yep. It's disgusting and my goal was to change endocrinologists because I am so unhappy with the one I have been seeing but there are only 3 endocrinologists covered by my insurance in my city and the only way to get in to see an endocrinologist is with a referral from a primary care physician (PCP). I reached out to my PCP this summer and after a good amount of effort on my part they finally sent the referral through and I still didn't get a call from the new endocrinologist so I had to call her office again and they set up an appointment for me. It was about a month ago. The new endocrinologist was no better than the endocrinologist I am currently dealing with. She looked at my DEXA summary and said my current doctor made the right decision to prescribe the zoledronic acid infustion. When I told her I was thinking about not having it again this year and depending on how things go I would get it again in 2023 if I felt it was necessary. She then said there was no data to back up skipping a year, which makes NO SENSE. When I was researching zoledronic acid one of the things that I read is that it is often prescribe annually for ppl with osteoporosis and every other year for ppl with osteopenia. When I told my old endocrinologist this he said that he would prescribe zoledronic acid for someone with osteopenia but he didn't reject the idea of me skipping a year. Basically, the new endocrinologist didn't listen to anything I said, and she said she would help me find an imagining center that offers DEXA with TBS and of course she never bothered to get back to me about that either, but she did make sure to set up a follow-up appt for later this month.
I managed to find an imagining center with TBS capabilities on my own and on Friday, I call the "new" endocrinologist and cancelled the follow-up appt. and I probably won't be going back to her.
Well done persevering and finding a facility that can do TBS with your DEXA scan. If you are able to schedule a scan there, I hope you post about your experience. Good luck with your next steps.
I'm curious about how a physical therapist can help with sleep issues. (if you don't mind my asking)
I was trying to be bit discreet LOL but I don't mind sharing. I have an over active bladder so I tend to get up several times a night. When I began researching every possible way to improve my bones, one of the things I found is that poor sleep can affect your bones. I always knew getting up a couple of times every night was not great for my health but I didn't know what I could do about it.
I had mentioned to doctors for years that I go non-stop and no one ever gave me any suggestions or help so when I started working to reverse my bone loss, I booked an appt. with a urologist. The urologist gave me a few options, botox (I'm not joking), meds, some type of accupuncture, or to see a pelvic therapist. I chose the therapist because I really prefer to avoid medications if possible. It seems to be helping and the goal is at some point I won't really have to think about it so much, meaning I hopefully just stop having the urge to go so frequently during the day and that I will stop waking up during the night. Note going 0-1 times at night is considered normal but going more than that is not.
Sorry, I didn't mean to pry I really thought it must be something of a posture/positioning nature or pain-related. But good for you for leaving no stone unturned. Glad PT seems to be helping. Yes, sleep is so important for bone health and for everything, really. I don't think enough attention is paid to how things like stress and poor sleep quality can affect bones.
It's fine that you asked. I really don't mind talking about it but I didn't want to over-share in case others thought it was odd. Not sure if that makes sense. Frankly, I can talk about all the things I am doing for my bones pretty much non-stop. LOL.
Regarding posture, I have thought about going to a chiropractor just to have my spine and alignment checked, but I haven't done that yet. When I was finally able to get the full reports for my 2019 and 2021 DEXAs, much sadly took a lot of effort, as I went through the two reports I noticed that on my 2019 DEXA the images of my lumbar region, my spine looks more "curved" than it does in my 2021 DEXA. My guess is that I wasn't position on the scanner correctly in 2019 and I think that may have effected my numbers alittle.
Another thing that I think was off in my 2019 DEXA is my hip scores. My left hip was a good bit "worse" than my right but in my 2021 DEXA my left hip improved by about 10% while my right hip came down a bit, so in the 2021 DEXA my hips show about the same. I really don't think there was a change in either hip, or at least not much, my gut tells me the 2019 DEXA was faulty.
The thing that infuriates me about this is that my endocrinologist put me on Alendronate based on my 2019 DEXA SUMMARY--he never saw the full report and I didn't know that the summary wasn't the full report. Just before my 2021 DEXA I stopped the Alendronate due to digestive tract issues. When my 2021 DEXA was done, once again my endocrinologist only looked at the summary and he said that the alendronate had improved my left hip by 10% and that was significant and because of that he recommended that I have a zoledronic acid infusion. My spine had also improved a little - my lumber t-score in 2019 was -3.9 and in 2021 it was -3.7.
I reluctantly had the zoledronic acid infusion because my endocrinologist was telling me my bones were "horrible" that is the word he used, and that I needed to do something.
I was so focuses on the infusion and worried about possibly having negative side effects that that is what I was researching. I had the infusion in November of last year and then in Dec and Jan I started researching ways to combat osteoporosis and that is when I found this website. When I posted my t-scores on this site, someone replied saying that my numbers seemed weird, that it would be odd for a bisphosphonate to improve one area so significantly and not show that much improvement in other areas.
Shortly thereafter I listened to a webinar during which Dr. Lani Simpson mentioned that many people never see their full DEXA reports that they only get a summary. That is when I learned that neither I nor my endocrinologist had every seen my full DEXA reports.
It took me over a month to get my full reports because the imagine center refused to print them out for me and, to put it simply they don't know what they are doing. And it took me another 2.5 months to get my ancillary data--because my imaging center doesn't know what they are doing, I literally called the GE Lunar manufacturer and spoke to the technician who services the GE LUNAR scanner that my DEXAs were done on and he walked me through how to access the ancillary data. Then I told the office manager at the imaging center that I knew it could be done and they reached out to the technician and after he walked them through the process I finally received the data.
Once I had all the data, that is when I discovered that my endocrinologist's theory that the bisphosphonates were working was based on faulty data. No, I am not happy about this but I'd had the infusion so...
Over the last 10 months I've also learned about tests to rule out secondary causes of osteoporosis--most of which my endocrinologist did not run prior to prescribing meds. Some of those tests are bone turnover marker tests. Had he done the bone turnover marker tests I would have a baseline for future comparison. Additionally, 3 months after starting the alendronate, he could have ordered another bone turnover marker test to see if the bisphosphonates were doing what they are supposed to do. Needless to say I am not very happy with my endocrinologist.
I tried to find an new endocrinologist but the woman I saw was literally no better so for now I will have to stick with the one that I have. During my last appt. in August, I did get him to write a order for bone turnover marker tests but I haven't had them done yet because I left his office 4 messages asking if I need to do anything special to prepare for the tests other than fasting (I saw a webinar in which some doctor said there is something specific that you need to avoid for more than just 24 hours before getting the bone turnover tests but I can remember what he said) and it's been 2 months and I have never gotten a response from the his office.
I had to call his office today to get them to write a referral for the DEXA w/ TBS at the imaging center that has TBS capabilities. I tried to emphasis that I need it done ASAP so I can get the thing done in early December but I doubt they will get back to me. If I don't hear a response by the end of the day I'm planning on driving to the office on Monday.
My endocrinologist is expecting me to have another zoledronic acid infusion done this year but I'm really considering not having if. If my next DEXA doesn't show significant improvement, what's the point of taking it, and because he didn't do the bone marker tests as he should have I have no way of knowing if the meds actually worked. On the otherhand if my bones do show improvement, given that I have changed so many things, diet, supplements, exercise program, etc. I won't really know what caused the improvement.
I had originally asked my endocrinologist about natural way to improve BMD and he dismissed my question and pretty much pushed the meds. It wasn't until 2 years later, when I started doing my homework that I learned that there are actually a lot of things that you can do to try to increase bone density. Additionally, a friend, who is male, found out he had osteopenia when he went to a health screening. He was in his 40s at the time. They used one of those scanners that check the bone density in your heal and when it showed bone loss they sent him to get a DEXA scan which confirmed he had ostopenia. He opted not to take meds and his bones improved. I don't know by how much but they did go up and he doesn't have any fragility fractures, so I think skipping this next infusion might make sense for me and I can simply have another DEXA a year after this next one and make him check my bone turnover markers in between and sort of monitor the situation myself.
oh wow you have been so thorough and found out some amazing things. Thank you for doing that. Who knew we don’t get the information we need and the doctor looking after you doesn’t take the time to do his job properly. I think they use their time to make money and leave no time to research or bother to research in their own time.
You certainly are tenacious in pursuing all aspects of your bone health and wellness. Well done, despite how frustrating it can be. I think paying attention to posture and alignment is so important. I don't know anything about chiropractic, but another avenue for this is a spine specialist physio/PT. Many work on this with Pilates, as I'm sure you know. It's frustrating there aren't more Pilates instructors who are trained in OP, though.
What an ordeal you went through, just to get your complete DEXA reports. It's shocking the office manager at the imaging centre didn't know how to retrieve your full report. Wow. The potential for accuracy and discordance issues with DEXA are really interesting, especially when you consider that vital decisions about diagnosis and treatment are involved. I hope you're able to successfully get a TBS with your next DEXA scan. Many are turning to REMS scans as well, which claim to assess bone quality in addition to density. (I realise you're in the US and there aren't many locations as of yet.)
Hopefully you can get your referral asap. Maddening that you may have to go in person to request it - again.
Good luck, FF.
I considered the REM. I learned about it from Europeans on this website. I did reach out to the EchoLight company and they sent me a list of facilities in the US that have REM scanners but there isn't one in my state. Additionally, REM scans aren't covered by insurance--my guess is they have not yet gotten FDA approval. I called the closest REM imagining center and it would cost me $650 (talking to the Dr. before the scan, the REM scan which is $75, and the followup consultation after the scan) and it's about a 5 hour drive from my home. The imagining center that I found that has DEXA with TBS capabilities is approximately a 3.5 hour drive and the facility is covered by my insurance so I wouldn't have to pay anything out of pocket. I would prefer the REM scan but given that I want to get it done as soon as possible, I think for now I am sticking with the DEXA w/ TBS--I called my endocrinologist's office Friday morning, they didn't call me back (they NEVER return calls, which is unprofessional and annoying) so my plan is to go to his office tomorrow and ask to speak to the nurse and get the referral so I can send it to the facility and get my DEXA scheduled. They are booked through November, so I need my referral in ASAP so I can get it done in December. My one year anniversay for my first zoledronic acid infusion is this week and my goal was to have my DEXA after 1 year, to see if there had been change in my BMD.
It's a shame that a facility offering a REMS scan isn't closer or more affordable. REMS has apparently received FDA approval. However, DEXA scans remain 'the gold standard' and I imagine insurers and most doctors will not accept REMS until there is a longer period of study/use and more robust data.
echolightmedical.com/fda-cl...
It's a shame really, because diagnosis and treatment seem so focused on bone density, rather than the properties of bone that give it strengh and quality. Hopefully you'll get your DEXA with TBS soon and learn more.
I stumbled upon another test that claims to provide insight into bone strength and quality. It doesn't sound like anything I'd like to have done. But it speaks to the idea of researchers looking for more complete understanding of bone health than the DEXA scan offers.
Good luck getting your referral today. Shame you have to hound them, but if you tell them you're not proceeding with further treatment until you have a scan, I would hope they'd snap to.
I was booked to have it but changed my mind and prefer to take supplements, do exercise and use vibration plates. The side effects I read about on here were just too frightening. Please research very thoroughly before you make your decision. Good luck.
Have to say I stopped AA after four months because I felt so ill, when my rheumatologist found out I was offered infusions but refused.
I did not have the problems the original poster had - in fact oesophageal problems were the only one I didn’t have and because of that I wasn’t confident I would feel well on infusions either. I’m sticking with diet, exercise and my Marodyne LiV.
The OP wanted opinions though - and my friend has used zolendronic successfull, was happy taking it and wants to start again as soon as she can.
many thanks for this posting. It’s SO difficult to know what the right thing to do is.
Any information, good or bad, he
S
I took alendronate for 1.5 years and it caused digestive tract issue so I stopped taking it the week of my 2nd DEXA--my BMD improved slightly, lumbar spine went from -3.9 to -3.7.
I took a 4 month holiday and in November 2021, I had my 1st zoledronic acid infusion. Prior to having the infusion I talked to my dentist and had a complete oral exam including a full set of xrays. One week before the infusion, I had bloodwork done to check calcium levels and my kidneys.
The day of the infusion, I made sure to drink plenty of water prior to and after having the infusion, the infusion was administered over at least 15 minutes (if you are concerned you can ask if they will make this 30 minutes), I took 2 tylenol with plenty of water a couple of hours before the infusion and after having the infusion, before going to bed that night, I took 2 more tylenol with plenty of water. NOTE: DO NOT TAKE NSAIDS with bisphosphonates.
I've had no major issues or side effects from the zoledronic acid so far. Within 15 - 30 mintues after having the infusion, I had some sharp pains in my neck but it wasn't that bad nor were they too painful--it was just something I don't normally experience, and it didn't last long. For a couple of weeks after the infusion I experienced dry mouth so I used Biotene mouth rinse and my throat was a little sore. Both the dry mouth and sore throat eventually went away. The strangest thing I experienced from the infusion happened a couple of weeks after having it--my lower jaw and lower teeth all started tingling--if felt like a low current electrical volt was running through my lower jaw to the tops of my teeth--very strange but didn't last too long and it only happened that once.
THINGS I RECOMMEND--take a look at my bio on this site. There are 3 links. One link is to a list of tests that you want to at least discuss with your doctor before taking osteo-meds. There is another link to a pdf about bone turnover markers. If you haven't had your bone turnover markers tested you should do so before getting the infusion--this will give you a base line for comparison, then after having the infusion the test(s) can be run again to see if the bisphosphonate infusion is having the desired effect (if you just wait until your next DEXA you don't really know if the bisphosphonates were actually doing what they are supposed to do). The 3rd link is some helpful dietary info.
Additionally, I just read an article about bisphosphonates. Note, it was pretty anti-bisphosphonates and I don't want to talk you out of taking them, but the article said something interesting that you might want to at least run by your doctor (I will be asking my doctor when I see him later this month).
"Increased risk of ONJ has been seen more frequently in the nitrogen-containing drugs, most likely due to their differing mechanisms of action. The non-nitrogen containing bisphosphonates are metabolized by osteoclasts intracellularly into inactive non-hydrolyzable ATP analogues, which are directly cytotoxic and induce apoptosis. The nitrogen-containing versions inhibit critical enzymes in the mevalonate pathway, thus suppressing prenylation of small GTPases essential for many cellular functions."
ONJ is rare. I am NOT trying to talk you out of needed meds. I have taken bisphosphonates.
The article lists
Etidronate Didronel® Oral/IV Does not contain nitrogen Procter & Gamble
Zoledronic Acid Zometa® IV Contains nitrogen Novartis
When I see my doctor I am going to ask him about the article and about Etidronate. It may or may not be a better option but it might be worth asking your doctor about.
Hope this was helpful.
If anyone else is reading this and is familiar with or has taken Etidronate (Brand name Didronel®), please share what you know. Thanks
My elderly aunt took Didronel for years and carried on crumbling until eventually she was on oxygen and her quality of life was nil. She had been a very active person all of her life, she kept dogs and horses, played golf and was a seriously keen gardener, she was a real outdoor person.
That as much as anything has put me off taking bisphosphonates - when I mentioned to my fracture nurse that my aunt had taken them for years and just kept crumbling I was told ‘she probably wasn’t taking it properly’. I knew all about bisphosphonates and how to take them from my experience with her so that was a load of nonsense.
I’ve come to the conclusion in the end it’s just the luck of the draw.
Please read the information on ONJ as it gives the stats around taking these drugs just for osteoporosis.
strwebprdmedia.blob.core.wi...
The other conditions are known to have a higher risk of ONJ.
You could ring the helpline to discuss this. 0808 800 0035 from the UK.
.I was given a yrly infusion of zolodronic acid for 3ys stopped after 2 with side effects joint pain bad knees and hands been off of it for 2 yrs and still got affects from it also reflux which I never suffered from but every one is different but never again will I ever take osteoporosis infusions I have osteoporosis and osteoarthritis and was never offered a dexa scan had 2 vertebrae fracture my dog pulled me to chase a squirrel very strong little dog had xray so no not for me but maybe you will be fine good luck
Steroids and osteoporosis 
Osteoporosis and static bike exercise 
Osteoporosis and Epilepsy Medications
osteoporosis help needed
Help - Osteoporosis and cancer 
